Poverty in South Africa is basically a general form of deprivation, which arose from an unequal distribution of resources. Overcrowding, illiteracy, unemployment and lack of access to energy sources and water are conditions associated with poverty and important factors in determining the failure of patients to cope with ESRD.
This thus completes discussion on the macro impacts.
2.12. Role of the Nephrology Social Worker
Ross and Deverell (2004:15) highlight the importance of the professional caregiver-patient relationship, stating that there has been a shift of emphasis from repairing damage caused by disease to a focus on education and understanding about living with chronic illness. In this regard, information, advice
and support are among the most important interventions social workers and allied health care professionals have to offer, their goal being to help the patient live as normal and satisfying a life as possible within family and community. Such help needs to be approached with care, sensitivity, information and support provided within the context of a professional relationship.
Hence the discussion that follows will focus on the role of the social worker in nephrology.
The WHO definition of health as defined earlier highlights the contribution of social work to the field of health in the following ways:
It notes the central role of social well-being for the attainment of a state of health
It implies the notion of a holistic approach to health
It de-emphasizes the bio-medical perspective of health as the absence of disease
Schlesinger cited in McKendrick (1991:123) proposed an alternative definition of health in view that social workers promote healthy functioning despite the presence of disease and symptoms, as follows:
Health involves not the absence of disease but the capacity to cope in physical or psychological terms. Health is related to the quality of social relationships and the capacity to carry out a variety of activities consonant with age, interests, physical and mental capacities.
Suffice to say that with the gradual shift in medicine to a more holistic approach to health care, social work is being challenged to re-assess its contribution to the health field. Hence health care social work practice attempts to address more appropriately the interplay of the economic, environmental, social, psychological, cultural and biological factors affecting the health status on the individual.
The nephrology social worker provides a broad range of services and these encompass concrete (information and referral) and psychosocial, therapeutic type services. Examples of concrete services are those centered around financial considerations, transportation, employment and housing. Therapy would encompass issues such as depression and anxiety, fear of death and dying, family concerns and sexual dysfunction.
A total, comprehensive therapeutic effort from the entire multidisciplinary team is required to minimize the emotional impairment that occurs with dialysis patients.
Patients with chronic renal failure feel shock, disbelief and anger upon learning that they are in renal failure. Family members often feel the same thing, and experience guilt or self blame.
The social worker’s role is to assist the patient in redefining his life goals in light of the limitations imposed by dialysis. In working with patients, the target areas would involve intra personal subsystems as well as interaction with the social and physical environment, such as the dialysis unit, and the hospital. Goals also include changes in cognitive thinking, such as helping the patient understand the reasons for noncompliance and reframing compliance so that it is consistent with the patient’s understanding of illness, altering emotional thinking, helping the patient to feel less depressed about changes in life caused by renal disease; and helping the patient to make behaviour changes such as reducing the patient’s demand for analgesics.
After addressing emotional needs arising from the diagnosis of renal disease, it is important to ensure that the patient is educated in all treatment alternatives. Thus the task of the social worker would be to help patients understand the risks and complications that accompany treatment alternatives of HD, CAPD and transplantation.
An important goal is to help the patient adjust to life on dialysis. A patient once reported to the social worker that “although dialysis was keeping him alive, it was
a mixed blessing”. Dialysis does impose very stringent limitations on the patient’s lifestyle because it involves time commitments: travel restrictions; and frustration of basic drives such as food, water and sex. Most patients resent the restrictions and impositions that dialysis entails. Specifically it is critical for the patient on dialysis to comply with medical and dietary regimens and this requires that the patient assumes an active role in treatment and rehabilitation. However denial of illness and dependence on the machine results in behaviour that is maladaptive and interferes with treatment. The social worker helps the patient recognize the reasons for noncompliance and need for control into a more positive direction, including employment.
Callahan (1998:632) reports that skilled social work interventions directed at treating depression are critical to quality patient care. Therefore psychosocial interventions are driven by skilled biopsychosocial assessment that focuses on predictors of adaptation such as previous coping styles, support systems, developmental strengths, social role functioning, pre-morbid norms for well-being and socioeconomic supports. Research by Callahan (1998:632) also reports that 76% of depressed patients would prefer to seek counseling from the nephrology social worker on the treatment team. Thus the nephrology social worker must provide skilled assessments because patients’ health status, needs, goals and environment continually change, and adequate assessment and treatment can lead to improved outcomes.
Intervention with the family is also identified as the therapeutic unit. The objective of family intervention by the social worker is to alter the influences that contribute to the dysfunction of one or more family members.
Fortner-Frazier (1981) reports that the onset of ESRD, markedly changes family relationships. In the dialysis setting, the social worker finds herself doing family casework when the patient’s problems are affecting family relationships or when problems at home affect adjustment to medical treatment.
Areas of intervention with the family are as follows:
Financial hardships due to job loss and medical expenses that often cause role reversal among spouses
Changes in self-image, in terms of physical appearance and personality expression
Conflicting feelings of dependence-independence on the machine or on the spouse
Changes in the marital and family relationship, such as lack of interest in sex or impotence, curtailment of social activities, and the loss of involvement with children
The unpredictability of the disease, the threat of death are anxiety producing for families as well as for the patients
Thus the social worker’s role is to help the family members identify their problems, become aware of their coping patterns and how they express internal conflicts through attitudes and behaviour. The intention is to identify dysfunctional interactional patterns to be replaced with more facilitative ways of relating to one another as a family. It is prudent to establish a relationship with the patient’s support system as this keeps the family informed about the patient’s progress, which in turn may offer suggestions about effective ways to interact with the patient. The family also provides valuable information about how the patient functions at home.
Hence individual and family intervention has been highlighted because it is seldom in the dialysis population that the patient is treated by the social worker without some involvement with the family or support system. This intervention with the family is often referred to as “family therapy”.
Callahan (1998:633) reports that social support from the family influences morbidity, mortality and the course of illness, adding that ESRD impacts the
marital role and marital adjustment and causes changes in other relationships, by impacting the functioning of the family system. It is further reported that family psycho-education is an effective type of intervention used in working with families who have a member with chronic illness, stressing that family education and family therapy improve patient compliance and assist the patient and family in coping with and adapting to changes brought about by illness and hospitalization.
This supports the patient in improved functional status.
Crisis intervention is a frequently used treatment modality as patients tend to experience many crises during the course of the illness causing disequilibrium and interference with emotional functioning. Hence the goals of social work crisis intervention include relief of symptoms and restoration to pre-crisis functioning.
The social worker assists in foreseeing future crises and plans effective coping strategies based on problem-solving skills. Another modality of treatment is education. Often information imparted at the outset of treatment is not successfully integrated because the patient is generally overwhelmed physically and emotionally by the disease lending to denial of the long-term need for treatment. This implies that the education process with the patient must continue throughout.
Patient compliance depends on patients’ understanding, patient perceived value of health outcome, and perception of vulnerability. Coping with chronic illness requires cognitive-behavioural skills that help the patient control the adverse of the disease by adhering to the demands of the treatment regimen. Thus cognitive behavioural interventions are also implemented which can increase dietary adherence, decrease depression and increase life satisfaction in ESRD patients as well increase rehabilitation potential. Suffice to say social workers are showing positive outcomes from cognitive-behavioural interventions with ESRD patients in the areas of patient compliance and adaptation to illness.
Callahan’s article (1998:630) titled “The Role of the Nephrology Social Worker in optimizing treatment outcomes for End-Stage Renal Disease Patients” also maintains that group therapy also increases social support and quality of life, and physical health for patients. Group work focuses on education, communication issues, health behaviours, increasing coping capacities and psychosocial adjustment. Group work outcomes would include reductions in mood disturbance and can improve overall rehabilitation potential of young persons with ESRD.
Literature suggests that ESRD patients are capable of working than actually do work. The literature identifies barriers to vocational rehabilitation and associates vocational rehabilitation with medical, psychological and social adaptation. The research also supports the impact of psychosocial factors in the maintenance of employment among HD patients (Callahan, 1998:632). Hence early intervention, education and psychosocial support have a positive effect on maintaining employment as well as on reducing hospitalizations to support employment.
Hence individual, family and group work interventions are aimed at increasing social support which has a direct impact on the psychosocial adjustment and functioning of the patient with ESRD.
2.13. Role of the Multidisciplinary team
The Renal Multidisciplinary team essentially consists of the following members:
renal nurse, dietitian, social worker, clinical psychologist and nephrologist.
The activities and responsibilities of the social worker within the renal multidisciplinary team are as follows:
Sharing responsibility and stimulating appropriate planning for patient and family care
Communicating significant social, emotional, economic and cultural factors which may affect illness, treatment
Maintaining liaison and encouraging continuity of care
Identifying and facilitating the development of resources
Educating team members on social services
Participating in and facilitating relevant social action
The challenge herein lies in the contributions of various professionals in health care settings and rests on the extent to which the interplay of psychological, social and biological factors in the course and outcome of disease is recognized and accepted.
The social worker serves as an intermediary. The social worker provides the interdisciplinary team with a biopsychosocial view of the patient’s strengths and needs through use of the person-in-environment model of assessment.
In Callahan’s study (1998) research was conducted with HD patients and showed that a social work intervention aimed at including the patient in setting rehabilitation goals increased interdisciplinary team care planning interventions to support rehabilitation goals.
The emphasis in medical social work is on the mutual interaction of the patient and the patient’s context such that the nephrology social worker’s ongoing biopsychosocial assessment which provides the basis for collaborative team interventions to ameliorate psychosocial problems that have a direct impact on treatment outcome.
ESRD patients experience multiple losses and psychosocial risks associated with their diagnosis and treatment. They require comprehensive psychosocial interventions at various stages throughout the course of their illness. The lifetime course of the ESRD patient’s treatment may include infections, family dysfunction, changes in functional status, depression and issues of death and
dying. Barriers exist in the socioeconomic and biopsychosocial realms that negatively impact patient treatment outcomes. Callahan (1998:636) states that the identification of these barriers through a skilled biopsychosocial assessment is critical to maximizing patient outcomes, adding that that these skilled psychosocial interventions can alleviate psychosocial risk factors , thus improving outcomes for the ESRD patient. Callahan (1998:636) mentions a study in which it was reported that patients ranked the services provided by the nephrology social worker in the top four of 25 aspects of care, and another study showed that 91%
of the patients believed that access to a nephrology social worker were important.
2.14. Conclusion
There is a considerable amount of literature on understanding what kidney disease is, its trends, prevalence, as well as understanding it as a biological phenomenon and the challenges it imposes on psychological and social functioning. From the literature presented, it is thus evident that patients with ESRD on dialysis therapy face a wide variety of challenges across different spheres of the lived experiences. This study aimed at obtaining thick descriptions of the experiences of patients with regards to the psychosocial effects of dialysis therapy and in so doing assists and informs the health professionals in intervening at the social, psychological and macro levels of functioning to facilitate a holistic and client centred approach towards interventions.
CHAPTER 3
RESEARCH METHODOLOGY
3.1. Introduction
Babbie and Mouton (2001: 74) refer to a research design as a “plan or blueprint of how you intend conducting the research”. There is much confusion between research design and research methodology. Research designs attempt to answer different types of research problems or questions, and different combination of methods and procedures are employed. Methodology focuses on the research process and allows the researcher to follow certain procedures.
Methodology includes research design, methods of data collection, sampling techniques, data analysis and reporting. Clearly methodology is important as it provides the researcher with the acceptable standards of conducting the research. Validity and reliability of the research findings tend to depend on the methodology used in the research.
What follows is a discussion of the research design and data collection methods.
In addition the limitations of the design and methodology are examined and this is followed by a discussion of issues of reliability and validity.
3.2. Research Design
A qualitative research approach is considered appropriate for this study as the primary emphasis in such an approach is placed on the subjective meaning of an experience communicated by subjects to the researcher. Qualitative research aims at understanding and interpreting the meanings and impact of given phenomena. In this study, patients’ experience and meanings attached to these experiences will be explored. Insights gained through such processes then may
be used to enhance nephrology social work practice, not by establishing causality but by changing and enhancing comprehension of the phenomena as a whole.
The use of qualitative research methodology enables the researcher to obtain a rich holistic understanding from the data that is available in the form of words, pictures, quotes and descriptions.
This study was concerned with gaining an understanding of the experiences of patients on HD and CAPD in ESRD. In its broadest sense, the qualitative research paradigm refers to research that elicits accounts of meaning, experience and behaviour (De Vos et al 2002). Rich descriptions of individuals’
perceptions, beliefs and feelings provide insights into the meanings and interpretations given to various events and behaviours.
The researcher used a combination of exploratory and descriptive research designs within the qualitative research paradigm.
The study used an exploratory research design because De Vos et al (2002) maintain that exploratory research is conducted to gain insight into a situation, phenomenon, community or individual. This study focused on RRT options in ESRD as perceived by the patients. It explored phenomena without any manipulation and control of human behaviour. Hence, the researcher was able to obtain a greater understanding of the patient’s knowledge and views of RRT as they experience it. As limited local updated literature is available on the reflections of patients on RRT in ESRD in South Africa, an exploratory design was used for the purpose of asking questions and seeking out new insights.
Babbie and Mouton (2001) point out that the less developed an area, the more likely exploration should be the design used to build a foundation of general ideas and tentative theories, as in the case of nephrology social work and therefore in this study.
Babbie and Mouton (2001) further report that description is a more intensive examination of phenomena and their deeper meanings, thus leading to a thicker description. This study also accommodated a descriptive research design because it described the psychosocial factors that impact on treatment of ESRD patients. From the descriptive details, the study attempts to generate common themes.
De Vos et al (2002) indicated that descriptive and exploratory research may blend in practice; descriptive research presents a picture of the specific details of a situation whereas exploratory studies aim to become conversant with basic facts and create a general picture of conditions. The researcher was able to do both, as there were no previous qualitative studies that have been done on experiences of patients on HD and CAPD in ESRD in South Africa, hence the exploratory nature; and patients’ accounts of their experiences will add to the richness of a thick description, hence the descriptive nature.
3.3. Sampling
According to Brink (2006: 124) sampling refers to the researcher’s process of selecting the sample from a population in order to obtain information regarding a phenomenon in a way that represents the population of interest. Selection of participants was done using the non-probability sampling method, often used in qualitative studies. According to Babbie and Mouton (2001) when non-probability sampling is used; the researcher is able to handpick the sample, selecting those elements that are information rich according to the nature of the research problem and the phenomenon under study.
As this was an explorative, descriptive study, non-probability sampling was used for the purpose of identifying, exploring and understanding the experiences and challenges of patients on HD and CAPD in ESRD.
Patton as cited in Marlow (1998) identifies different types of sampling methods:
In this study criterion sampling was used. Criterion sampling involves the selection of participants according to some eligibility criteria.
The researcher was guided by the following criteria in the study:
¾ Patients who were accepted onto the chronic renal programme between 2005-2007, and would have to be on chronic HD and CAPD for a minimum of four months as the researcher was of the opinion that this would be sufficient time to have experienced both treatment modalities
¾ All population groups and both genders, who are willing, were admitted in the study
¾ Patients between the ages of 20-60 years were chosen
¾ Proficiency in English was not a requirement and a social worker was available to serve as an assistant interpreter, which was not required
¾ No previous kidney transplantation was performed on the patient
The sample that was chosen for the study explored the patient’s perspective of the respective treatment modalities and in so doing, served to identify and provide understanding of their experiences and challenges in end stage renal disease.
The setting was the renal unit at one tertiary hospital in the Durban Metropolitan region.
The chosen hospital is a teaching hospital where the researcher is employed as a social worker in the Renal Unit. Thus, knowledge of patients and procedures did not pose a problem.
The sample of participants chosen for the study was drawn from the population of patients as outpatients attending the respective clinics i.e. HD and CAPD at the hospital. This type of sample is indicative of availability sampling. As Babbie and Mouton (2001) point out, this type of sampling takes the cases at hand, that is, those that are linked to the topic under study, available to the researcher and convenient to access. Access to the sample involved prior consultation with the